Motor Neurone DiseaseMotor Neurone DiseasePain and Associated Psychological

Perspectives in Terminal Illness

BEGINBEGIN

Click for Full Text

• The following presentation will focus on the management of pain and its psychological effects on Motor Neurone Disease sufferers in the last 6-months (as determined clinically) before death

• The area of pain in terminal illness is especially important as sufferers need to manage the pain in a situation where death is inevitable

InstructionsInstructions

The audio is synched to run with the slides and any information onthe slides will automatically progress with the audio.

At the end of each slide you will be able to either go back to theprevious slide, replay the current slide or progress to the next slide

using the navigation buttons on the bottom of the page.

NextPrevious Replay

• As this presentation will show, this creates issues of comorbidity where pain endurance is exacerbated by a sense of hopelessness, leading to depression and suicidal thoughts

• Not a medical diagnosis, but a disease that:

• has no known cure • is expected to result in the eventual

death of the sufferer

Defining Terminal IllnessDefining Terminal Illness

“Terminal illness is an irreversible illness that, without life sustaining procedures, will result in death in the near future.”

(Terminal Illness Law and Legal Definition, 2011)

• Terminal if death is expected to occur within 6-months of diagnosis • No particular ailment that can be classed as terminal• Diseases may be considered terminal at a particular point in progression • Treatment efforts are usually halted and palliative care is put in place• This provides pain relief and other appropriate measures• Associated pain progresses through final stages of illness• Physical & psychological pain creates issues with death being inevitable

NextPrevious Replay

Defining PainDefining Pain

• Types of pain include:• Acute Pain - specific injury that signifies injury or damage has occurred • Chronic Pain - Constant pain that persists beyond expected healing time • Referred - Pain that occurs from deep structures and is difficult to locate • Radiating - moves from its point of origin to other parts of the body

• Sensation thresholds appear to be universal • Pain perception may differ across cultures • Pain is a highly personalised experience

An unpleasant sensory & emotional experience associated with actual or potential tissue damage

NextPrevious Replay

MND is a disabling and ultimately fatal disease that

has few effective treatments

• A progressive neurodegenerative disease• Afflict the upper and lower motor neurones• Damage and death of the motor neurones is

the underlying cause of the disease • When motor neurons fail to give out signals, muscles cease to respond and

the process of muscle wasting begins (atrophy)• The result is a loss of limb movement and difficulties with speech, swallowing

and breathing• There is no known cure or cause• First characterised in 1874 by Jean-Martin Charcot• Relatively rare - approximately 5000 cases in the UK at any one time • No genetic evidence exists for the onset of the disease• Length of life from first diagnosis is typically 2 – 5 years

Defining Motor Defining Motor Neurone DiseaseNeurone Disease

NextPrevious Replay

Pain Associated with MNDPain Associated with MND• Non-motor disturbances affect most sufferers• Include a range of difficulties - e.g. fatigue, sleep disorders, constipation • Pain, anxiety and depression feature prominently• Pain ranked as the number one physical problem in terminally ill patients• Anxiety and depression ranked first and second in a list of psychological

difficulties

• The following section focuses on the physical and psychological pain associated with terminally ill patients

NextPrevious Replay

Pain Associated with MND - Pain Associated with MND - PhysicalPhysical

NextPrevious Replay

Management of Pain Associated Management of Pain Associated with MND - with MND - PhysicalPhysical

NextPrevious Replay

• Only available treatment for MND is Riluzole (Rilutek) • Pharmacological management of pain in MND can incorporate the use of

medication that is non-steroidal anti-inflammatory (NSAID)• For pain alleviation, tricyclic antidepressants and anti-epileptic drugs such as

Neurontin or Gabapentin can be useful. Neurontin may also help with relief of spasms

• Another method of managing pain associated with MND is through the use of Marijuana (Cannabis)

• Physical disability leads to activity limitations and can be characterised by utilising physical performance measures

• The physical aspects of MND frequently receive the majority of attention with psychosocial aspects afforded secondary important

Pain Associated with MND - Pain Associated with MND - PPsychologicalsychologicalPhysicians and others involved in the care of patients with MND need to be aware that depression associated with pain is a significant problem irrespective of the level of physical disability

Tedman, Young & Williams, 1997

• Depression may be a reaction to pain, however it may also be a comorbidity of the condition

• Distinguishing remains a dilemma• Causes difficulties with diagnosing• Further issues of cultural restraint and relative levels also add to the complexity

NextPrevious Replay

Measurement of Depression Measurement of Depression Associated With Pain in MNDAssociated With Pain in MND

• Beck Depression Index (BDI) –measures the severity of depression • Short form used in a study of terminally ill patients

NextPrevious Replay

Measurement of Depression Measurement of Depression Associated With Pain in MND Associated With Pain in MND cont…cont…• Self-Rating Depression Scale – 20 item self-administered instrument• Used in a study which looked at depression in chronic medical diseases

NextPrevious Replay

Management of Pain Associated Management of Pain Associated with MND - with MND - PsychologicalPsychological

NextPrevious Replay

Comorbidity FactorsComorbidity Factors (Desire for Death & Suicidal Thoughts)(Desire for Death & Suicidal Thoughts)

“Hope and hopelessness are important issues for MND patients, with hopelessness contributing significantly to suffering and for some a desire for hastened death”

(McLeod & Clarke, 2007)

• Physical pain and feelings of hopelessness have been noted as predictors of patient interest in assisted suicide

• ALS Functional Rating Scale (ALSFRS-R) assesses severity• In assessing symptoms of depression, patients may be administered the Patient

Health Questionnaire (PHQ) which assesses depressive disorders based on criteria in the DSM – IV

• Patients either have to accept or forgo life-sustaining therapies• The concerns of patients and caregivers bring about fears of pain and suffocation

that may manifest as both helplessness and hopelessness• With increasing levels of physical pain and comorbidity with psychological factors

in dealing with a terminal illness, the risk of suicidal thoughts is a concern• The desire for escape from intolerable pain is considered to be one of the most

frequently reported incentives for suicidal behaviourNextPrevious Replay

Suicide Vulnerability Suicide Vulnerability FactorsFactors

• Fear of losing autonomy• Loss of autonomy• Fear of losing independence• Loss of independence• Perception of being a burden on family / carers• Depression with a feeling of hopelessness as a consequence of the clinical

conditions• Hopelessness in dealing with pain when death is inevitable

NextPrevious Replay

Suicide FactsSuicide FactsAccording to Maytal and Stern, 2006

• Suicide is committed in only a minority of terminally ill patients

• Statistically significant association between clinical depression and the desire for hastened death

• 59% of terminally ill patients who expressed a desire for hastened death had clinical depression

• 8% of patients without a desire for hastened death were depressed• Terminally ill patients with a history of depression had vulnerability for a

desire for hastened death even if they did not have active symptoms of mood disorder

• Statistically significant association between a history of depression and a desire for a hastened death

NextPrevious Replay

SummarySummary

NextPrevious Replay

• Motor Neurone Disease facts & statistics – survival unlikely

• Stephen Hawking

• Initial reactions on discovering one’s fate can result in significant emotional trauma

• Affects patient and carer

• Definition of pain in general and pain associated with MND – both physical & psychological

• Increased recognition of cognitive and affective dimensions of pain

Summary cont…Summary cont…

NextPrevious Replay

• Pain measurement & management associated with MND – both physical & psychological

• Multi-disciplinary approach usually adopted

• Rating scales used to identify depressive symptoms

• Co-morbidity factors with physical & psychological pain contributing towards a sense of hopelessness & suicidal thoughts

• Pain can often enhance hope that an illness is being managed, with terminal diseases this is negated

Evaluation & SuggestionsEvaluation & Suggestions

NextPrevious Replay

• Managing pain in terminally ill patients requires a multi-disciplinary approach• Pharmacological & psychological intervention is required• Comorbidity is key in why it is considered “pain in special circumstances”• Stem cell & gene research for MND causes & cures are underway• Referral to a neurologist is the norm for patients diagnosed with MND• Future consideration to the pain associated with MND at an earlier stage • Thus ensuring a balance between physical and psychological pain management

Final ThoughtsFinal Thoughts

NextPrevious Replay

Coping with and managing pain can obviously be regarded as challenging in any situation. However, the feelings of depression and hopelessness associated with terminal illness create a unique circumstance under which individuals

need to cope with and manage pain without the positive effects of hope and whilst battling with related negative emotions.

ReferencesReferences

Return to 1st Slide

Albert, S. M., Whitaker, A., Rabkin, J. G., del Bene, M., Tider, T., O’Sullivan, & Mitsumoto, H. (2009). Medical and Supportive Care among People with ALS in the Months before Death or Tracheostomy. Journal of Pain and Symptom Management. Vol. 38, No.4, 546 – 553.

Anand, K.J.S., Craig, K.D. (1996). New Perspectives on the definition of pain. Pain. Vol. 67, Issue 1. P.3-6

Bohannon, R.W., DePasquale, L. (2010). Physical Functioning Scale of the Short-Form (SF)36: Internal Consistency and Validity with Older Adults. Journal of Geriatric Physical Therapy. Vol.33, Issue1, p.16-18

Brunner, L., S. & Smeltzer, S., C., O. (2010). Brunner & Suddarth’s textbook of medical-surgical nursing. Wolters Kluwer Health/Lippincott Williams & Wilkins: Philadelphia.

DeLisa, J. A. Gans, B. M. & Walsh, N. E. (2005). Physical medicine and rehabilitation: principles and practice. Lippincott Williams & Wilkins: Philadelphia.

Dobratz, M.C. (1990). The Life Closure Scale: a measure of psychological adaptation in death and dying. Hosp. J; Vol. 6. Issue 3. P. 1-15

Ganzini, L., Silveira, M. J. & Johnston, W.S. (2002). Predictors and Correlates of Interest in Assisted Suicide in the Final Month of Life Among ALS Patients in Oregon and Washington. Journal of Pain and Symptom Management. Vol. 24, No.3, 312 – 317.

Knight, K., L. & Draper, D., O. (2008). Therapeutic modalities: the art and the science. Lippincott Williams & Wilkins: Baltimore, MD.

Lautenbacher, S. & Filingim, R., B. (2004). Pathophysiology of pain perception. Kluwer Academic /Plenum: New York.

Lindner, M. D., Bourin, C., Chen, P., McElroy, J. F., Leet, J. E., Hogan, J. B., Stock, D. A. & Machet, F. (2006). Adverse Effects of Gabapentin and Lack of Anti-Allodynic Efficacy of Amitriptyline in the Streptozotocin Model of Painful Diabetic Neuropathy. Experimental and Clinical Psychopharmacology. Vol. 14, No. 1, 42 – 51.

Lloyd-Williams, M. & Riddleston, H. (2002). The Stability of Depression Scores in Patients Who Are Receiving Palliative Care. Journal of Pain and Symptom Management. Vol. 24, No. 6, 593 – 597.

Mancini, R., L. (2008). Motor neuron disease research progress. Nova Biomedical Books: New York.

Marcus, D., A. (2009). Chronic pain: a primary care guide to practical management. Humana Press, cop.: New York, NY.

Maytal, G., Stern, T.A. 2006. The Desire for death in the setting of terminal illness: A case discussion. Primary Care Companion Journal of Psychiatry. Vol. 8. Issue 5.

McLeod, J.E. & Clarke, D.M. (2007). A review of psychosocial aspects of motor neurone disease. Journal of Neurological Science, 258 (1-2) 4-10

Merskey, H. (1991). The Definition of Pain. European Psychiatry. Vol. 6, Issue 4. p.153-159

Miller, R.G., Mitchell, J.D., Lyon, M., Moore, D.H. (2007). Riluzole for Amyotrophic Lateral Sclerosis (ALS)/Motor Neurone Disease (MND). Cochrane Database System Review. 2007 Jan 24; (1); CD1001447

Mitsumoto, H. (2009). Amyotrophic lateral sclerosis: a guide for patients and families. New York : Demos Health.

Moore, C., McDermott, C.J., Shaw, P.J. (2008). Clinical aspects of Motor Neurone Disease. Medicine. Vol. 36, Issue 12. P.640-645

McLeod, J.E., Clark, D.M. (2007). A Review of psychosocial aspects of Motor Neurone Disease. Journal of the Neurological Sciences. Vol. 258 p.4-10

Ng, L., Khan, F. & Mathers, S. (2009). Multidisciplinary Care for Adults with Amyotrophic Lateral Sclerosis or Motor Neuron Disease. Cochrane Database of Systematic Reviews: Issue 4, Art No. CD007425. The Cochrane Collaboration. Pub by John Wiley & Sons, Ltd

Serpell, M. G. (2002). Gabapentin in Neuropathic Pain Syndromes: A Randomized, Double-Blind, Placebo-Controlled Trial. Pain. 99, 557 – 566.

Stiel, S., Hollberg, C., Pestinger, M., Ostgathe, C., Friedemann, N., Lindena, G., Elsner, F., Radbruch, L. and the Members of the HOPE Steering Group. (2011). Subjective Definitions of Problems and Symptoms in Palliative Care. Palliative Care: Research and Treatment. 5, 1 – 7.

Tang, N.K.Y., & Crane, C. (2006). Suicidality in chronic pain: a review of the prevalence, risk factors and psychological links. Psychological Medicine. Vol. 36. P. 575-586

Tedman, B.M., Young, C.A. & Williams, I.R. (1997). Assessment of depression in patients with motor neurone disease and other neurologically disabiling illness. Journal of Neurological Sciences. 152. Supp 1:S75-9

Terminal Illness Law & Legal Definition (2011). Retrieved on 13th May 2011 from http://definitions.uslegal.com/t/terminal-illness/

Zatzick, D. F. & Dimsdale, J. E. (1990). Cultural Variations in Response to Painful Stimuli. Psychosomatic Medicine. 52: 544 – 557.